Latest news with #ThrivingKids
Sydney Morning Herald
3 hours ago
- Health
- Sydney Morning Herald
‘You're saving money by having children go without': Parents scared of NDIS changes
Back from the school run at Blackett, in Sydney's north-west, mother of four Cara Delarue is scared and stressed. On Wednesday afternoon, Federal Health Minister Mark Butler announced sweeping changes to the NDIS, including moving thousands of children with mild and moderate autism onto a new system, Thriving Kids, as part of a savings push for the $46 billion scheme. Butler made several media appearances on Thursday, scrambling to reassure families there would be 'no gap between the stools'. 'Kids are not going to be taken off the NDIS because of what I said yesterday,' he told ABC radio. Two of Delarue's children have been diagnosed with autism, one mild and one moderate, although she finds those descriptors misleading. 'Sometimes your children aren't displaying significant signs upon assessment,' she said. 'They might show it in every other setting, but not when they're sitting there.' Delarue's son with moderate autism sees a psychologist, behavioural support therapist, occupational therapist and physiotherapist, and previously a speech therapist. She is concerned her son will lose some of this support when Thriving Kids – which will operate through Medicare, schools, childcare, community centres and playgroups – begins in July 2027. 'Not knowing what the future looks like is nerve-racking. Is my child going to lose more support? Potentially. Is it going to all fall onto the school?' she said. 'It's scary and stressful to think that the push for this might be a way to save money. You're saving money by having children go without the assistance they need.'
Sydney Morning Herald
3 hours ago
- Health
- Sydney Morning Herald
‘We wouldn't function as a family without the NDIS': Parents react to children being shifted off the scheme
It helped her understand social dynamics which she struggled with. Loading 'It was all to help her move with the group to understand social dynamics and, the invisible rules that many of us take for granted,' May-Bennett said. However, these are no longer funded under the scheme due to earlier changes in her daughters' qualifications for those programs. And without it, she doesn't know if her daughter would have come so far. 'I don't know how it's going to help, or not help children who are needing this intervention,' she said. 'It's just a big question mark'. Autism support groups on Thursday reported concern and anxiety among parents of autistic children due to the lack of certainty about what services they would continue to receive once they were taken off the NDIS. David Tonge, of the Victorian autism advocacy group Amaze (formerly Autism Victoria), said concerned parents had been calling him unsure about the definitions of 'mild and moderate' autism, as detailed by federal Health Minister Mark Butler at Wednesday's announcement. Butler said children with mild to moderate autism would be shifted from the NDIS to a new system, Thriving Kids. 'We wouldn't be able to work or function as a family without the support of the NDIS.' Orit Brand, mother of three autistic children 'Within seconds after the announcement, my phone was getting texts and calls from the community ... lots of community members contacted us saying, 'what does that mean?'' Tonge said. 'We're … saying hang fire, if you're already on [the NDIS] nothing's going to happen in the next little while.' But parents are concerned their child's eligibility might change and that they might not get supports they need, especially after children outgrow early intervention, which is the focus of Thriving Kids. 'This [question] goes back to why we've got an NDIS in the first place ... autism doesn't disappear when the child turns 10, all autistic people are going to have some level of support – it's a life-long disability, not a developmental disability,' Tonge said. 'That automatically means they're ticking a lot of boxes in the current [NDIS] eligibility requirements. There seems to be a prevalent view that autism can be treated, which isn't the case.' Tonge, a board member of the Australian Autism Alliance, said that while a national model was preferable to state-by-state programs, 'we need evidence to show some of these new programs are going to do what the community needs, and they need to listen to the community that knows what it's talking about and sees the [autistic] child's challenges every day.' Melbourne mother Orit Brand has three autistic children, two of whom have above-average IQs who need social and other supports. She said the NDIS system had been vital for her children, now aged 17, 14 and seven. Loading 'Each has improved their social skills. They have fewer meltdowns and that is a huge help in a family. They have made new friendships, and grown self-esteem,' said Brand, who is also a counsellor. 'We wouldn't be able to work or function as a family without the support of the NDIS.' Her middle child had benefited most noticeably, and through one-to-one work with his counsellor had developed the skills to communicate better with his parents and friends. 'Socially, he is more confident and better able to participate in class,' Brand said. 'The minister described Thriving Kids as supporting young people up to the age of 15 … [but] a child's actual age often differs from his or her developmental age,' she said. Cut-offs should be determined by young people's needs, not 'arbitrary cut-off', she said. Angelique May-Bennett also wanted to see more supports in schools for neurodiverse students, and if that happened, staff should be provided with adequate training. 'If they're going to be moving the support structure into the schools they have to mandate training, whether you're an independent … or a state school, it should be everybody, especially if they're getting funding. 'What's at stake if the government shifts supports out of NDIS into schools without mandating disability training is more children will be excluded like Billie was,' she said. Katie Koullas, an autistic woman and chief executive of the autistic-led group Yellow Ladybugs, and whose daughter is also autistic, said there was a risk that Butler's announcement would divide the autism community by 'forcing families to fight to prove their need, instead of fixing the system itself'. 'There may well be some benefits in what's being planned but … when the minister talks about 'mild autism' or says autism isn't lifelong, it really shows a lack of understanding about autistic experience,' she said. 'That's why families are so anxious right now.' Skye Kakoschke-Moore, chief executive of Children and Young People with Disability Australia, has said under the current access requirements children were already being removed from the NDIS in huge numbers. She welcomed Butler's comments that children on the NDIS will stay on the scheme until reforms are ready. 'The minister has said he will consult with the disability community, and it needs to happen ASAP, it needs to happen in a genuine way,' Kakoschke-Moore said. But she echoed that there was confusion and concern about how Thriving Kids would operate and if it was going to be run out of schools. 'If schools are appropriate settings for the supports to be delivered in, it needs to be done in a way that doesn't become a quasi-clinic and children are still removed from classrooms where they should be receiving an education,' Kakoschke-Moore said.
The Age
3 hours ago
- Health
- The Age
‘You're saving money by having children go without': Parents scared of NDIS changes
Back from the school run at Blackett, in Sydney's north-west, mother of four Cara Delarue is scared and stressed. On Wednesday afternoon, Federal Health Minister Mark Butler announced sweeping changes to the NDIS, including moving thousands of children with mild and moderate autism onto a new system, Thriving Kids, as part of a savings push for the $46 billion scheme. Butler made several media appearances on Thursday, scrambling to reassure families there would be 'no gap between the stools'. 'Kids are not going to be taken off the NDIS because of what I said yesterday,' he told ABC radio. Two of Delarue's children have been diagnosed with autism, one mild and one moderate, although she finds those descriptors misleading. 'Sometimes your children aren't displaying significant signs upon assessment,' she said. 'They might show it in every other setting, but not when they're sitting there.' Delarue's son with moderate autism sees a psychologist, behavioural support therapist, occupational therapist and physiotherapist, and previously a speech therapist. She is concerned her son will lose some of this support when Thriving Kids – which will operate through Medicare, schools, childcare, community centres and playgroups – begins in July 2027. 'Not knowing what the future looks like is nerve-racking. Is my child going to lose more support? Potentially. Is it going to all fall onto the school?' she said. 'It's scary and stressful to think that the push for this might be a way to save money. You're saving money by having children go without the assistance they need.'
The Age
3 hours ago
- Health
- The Age
‘We wouldn't function as a family without the NDIS': Parents react to children being shifted off the scheme
It helped her understand social dynamics which she struggled with. Loading 'It was all to help her move with the group to understand social dynamics and, the invisible rules that many of us take for granted,' May-Bennett said. However, these are no longer funded under the scheme due to earlier changes in her daughters' qualifications for those programs. And without it, she doesn't know if her daughter would have come so far. 'I don't know how it's going to help, or not help children who are needing this intervention,' she said. 'It's just a big question mark'. Autism support groups on Thursday reported concern and anxiety among parents of autistic children due to the lack of certainty about what services they would continue to receive once they were taken off the NDIS. David Tonge, of the Victorian autism advocacy group Amaze (formerly Autism Victoria), said concerned parents had been calling him unsure about the definitions of 'mild and moderate' autism, as detailed by federal Health Minister Mark Butler at Wednesday's announcement. Butler said children with mild to moderate autism would be shifted from the NDIS to a new system, Thriving Kids. 'We wouldn't be able to work or function as a family without the support of the NDIS.' Orit Brand, mother of three autistic children 'Within seconds after the announcement, my phone was getting texts and calls from the community ... lots of community members contacted us saying, 'what does that mean?'' Tonge said. 'We're … saying hang fire, if you're already on [the NDIS] nothing's going to happen in the next little while.' But parents are concerned their child's eligibility might change and that they might not get supports they need, especially after children outgrow early intervention, which is the focus of Thriving Kids. 'This [question] goes back to why we've got an NDIS in the first place ... autism doesn't disappear when the child turns 10, all autistic people are going to have some level of support – it's a life-long disability, not a developmental disability,' Tonge said. 'That automatically means they're ticking a lot of boxes in the current [NDIS] eligibility requirements. There seems to be a prevalent view that autism can be treated, which isn't the case.' Tonge, a board member of the Australian Autism Alliance, said that while a national model was preferable to state-by-state programs, 'we need evidence to show some of these new programs are going to do what the community needs, and they need to listen to the community that knows what it's talking about and sees the [autistic] child's challenges every day.' Melbourne mother Orit Brand has three autistic children, two of whom have above-average IQs who need social and other supports. She said the NDIS system had been vital for her children, now aged 17, 14 and seven. Loading 'Each has improved their social skills. They have fewer meltdowns and that is a huge help in a family. They have made new friendships, and grown self-esteem,' said Brand, who is also a counsellor. 'We wouldn't be able to work or function as a family without the support of the NDIS.' Her middle child had benefited most noticeably, and through one-to-one work with his counsellor had developed the skills to communicate better with his parents and friends. 'Socially, he is more confident and better able to participate in class,' Brand said. 'The minister described Thriving Kids as supporting young people up to the age of 15 … [but] a child's actual age often differs from his or her developmental age,' she said. Cut-offs should be determined by young people's needs, not 'arbitrary cut-off', she said. Angelique May-Bennett also wanted to see more supports in schools for neurodiverse students, and if that happened, staff should be provided with adequate training. 'If they're going to be moving the support structure into the schools they have to mandate training, whether you're an independent … or a state school, it should be everybody, especially if they're getting funding. 'What's at stake if the government shifts supports out of NDIS into schools without mandating disability training is more children will be excluded like Billie was,' she said. Katie Koullas, an autistic woman and chief executive of the autistic-led group Yellow Ladybugs, and whose daughter is also autistic, said there was a risk that Butler's announcement would divide the autism community by 'forcing families to fight to prove their need, instead of fixing the system itself'. 'There may well be some benefits in what's being planned but … when the minister talks about 'mild autism' or says autism isn't lifelong, it really shows a lack of understanding about autistic experience,' she said. 'That's why families are so anxious right now.' Skye Kakoschke-Moore, chief executive of Children and Young People with Disability Australia, has said under the current access requirements children were already being removed from the NDIS in huge numbers. She welcomed Butler's comments that children on the NDIS will stay on the scheme until reforms are ready. 'The minister has said he will consult with the disability community, and it needs to happen ASAP, it needs to happen in a genuine way,' Kakoschke-Moore said. But she echoed that there was confusion and concern about how Thriving Kids would operate and if it was going to be run out of schools. 'If schools are appropriate settings for the supports to be delivered in, it needs to be done in a way that doesn't become a quasi-clinic and children are still removed from classrooms where they should be receiving an education,' Kakoschke-Moore said.
Sydney Morning Herald
5 hours ago
- Health
- Sydney Morning Herald
Thriving Kids will displace me and lead to poorer outcomes for my son
This morning, as I sat in traffic in the rain ferrying my young son and his toddler sister to another of our frequent allied health appointments, the reality of what was outlined in Health Minister Mark Butler's Press Club speech really began to sink in. We are lucky enough to access National Disability Insurance Scheme funding to support my son with a developmental delay and there are many positives we've experienced. What I didn't realise before he became a participant was the significant non-financial costs that would come to our family. The time burden and the impact on our collective wellbeing is immense but difficult to quantify to someone who has not lived that same experience. It's a constant choice: how much intervention does our child need versus how much additional pressure does that put on our family to make it happen? Although I recognise the new Thriving Kids program has some practical benefits, it won't actually achieve the intended result of giving more choice to families and in turn leading to meaningful, tangible developmental outcomes for children. It will take choice and agency away and increase the already immense pressure on a growing number of families struggling to keep the patchwork of support together for their struggling kids. At its heart, the Thriving Kids speech betrays a profound misunderstanding of family disability support, rooted in outdated assumptions and conflicting messages. A 2021 paper published in medical journal Child: Care, Health and Development found that parents of preschool children with developmental disabilities frequently felt their expertise on their own child was dismissed by professionals, who often prioritised standardised assessments over parental insights. Families are the ones who know their child best and have the best incentive to use funding appropriately to ensure their child's support needs are met. And sadly, the current state-based systems that will be allocated more funding to support this are not structurally set up to deliver on the most key outcome: a family and child-centred approach. From day one of exploring my son's challenges, we were faced with practitioners so focused on a textbook that they missed the nuances of the child in front of them. They assumed they knew better about my son's strengths and needs than I did. My experience is not unique. For a while, I pushed my own instincts down because I thought the experts knew best. The result was a drop in my parenting confidence and a poorer relationship with my son because I felt pressure to analyse his behaviour rather than just enjoying being his mum. It was only after a conversation with my wonderful GP that she reinforced that my role as a parent in this process was much more important and pivotal than I had been led to believe. Loading We also found it difficult to find practitioners who were a 'fit' for my son and our family. Often we were met with inexperienced practitioners fresh out of uni, applying their knowledge from a textbook but not able to read the situation before them, and not equipped to understand their role not just in supporting skills development with the child but advising parents on what to focus on and how to navigate new challenges as they arise. When we did eventually find practitioners who were genuinely family and child-centred, we saw an utter transformation in our son. This is no accident. Research has repeatedly shown that family-centred care, which positions parents as partners, leads to better outcomes for children, improved family wellbeing, increased parental confidence and higher satisfaction with services. Many families in this situation will tell you a similar story: when the interventions aren't working and parents aren't being heard, the parent's mental health suffers, the child is often only told what's wrong with them, not what's right, and other children in the family take a back seat. The guilt and pressure are relentless. We went from pushback and highly emotionally challenging sessions to a scenario where our child was fully engaged, motivated and able to learn and grow. We as parents walked out confident that our practitioner was going to collaborate with us. At a point where we were approaching burnout, we were finally able to step into our own power as parents, confidently advocating for our child, underpinned by practical guidance from our valued allied health team.
